The Weather Channel just showed a picture of Hurricane Isaac and likened it to an MRI, circling the eye of the storm the way an MS lesion would be circled. So, here I am writing about Hurricane Isaac, Multiple Sclerosis and stress. Isaac has me very stressed. My son just moved to New Orleans Wednesday to start his freshman year of college. At midnight he will be in lock-down in his dorm. From what I am hearing, they will most likely lose power and there will be flooding. I’ve been glued to the TV all day, checking email and facebook for updates from the university and receiving and making necessary phone calls. He is hundreds of miles away. Piling on top of this is the fact that my son is fighting his own immune system and has been dealing with horrible symptoms. He has Rheumatoid Arthritis. The day before he left he struggled to pick up a glass. Stormy weather for him is what stormy weather is for me- horrible. All my symptoms return or worsen. He has debilitating pain and muscle weakness. He takes multiple medications to fight his disease, two of them suppress his immune system. He is sick and coughing and that worries me because it’s easy for his body to develop an infection, especially now that he won’t have access to doctors and medicine. This stress has my body numb and my muscles tight. It also has me thinking about how MS is like a hurricane, even when you know they are coming, they never let you know what they’re going to do once they have fully arrived and they always leave damage behind.
My son left for college this morning and through the constant ache in my heart I’m finding the good part to help me through this very long, slow-moving day. My mind has been reliving the moments that are a part of me forever. I can smell his sweet baby scent from the back of his neck that I inhaled daily from rocking him even when the books said I should be putting him down. I still feel the pit in my stomach watching him learn how to crash onto the front lawn riding his BigWheel. I can hear his raspy little voice telling me that I was a princess as he watched me put on my makeup and jewelry. I could fill pages with moments like these. I could also fill pages telling how life plays a cruel trick letting our children jump from one milestone to the next in the blink of an eye. Instead, I am going to tell you the good part. My son and I are very close and have a wonderful relationship. He’s also going to college! Thinking about him going to college and what he has chosen to study brings me to the good part of having MS. My son wrote a paper in high school about seeing me in the hospital and watching me recover from relapse and flares. He wrote that seeing these things helped him to know what he wants to do with his life. He changed focus in school and started classes in health science and became very active in HOSA, a club that prepares students for careers in the healthcare industry. My son is now a BioChemistry major and is planning on continuing on to med school to become a doctor. While my MS took so much away from me, it gave my son invaluable direction. This is the good part of MS for me. What are the good parts of your trials and are you willing to see them? I will painfully miss my son and MS will take pieces of me that will hurt emotionally as well as physically but finding the good parts and holding on to them have and will continue to make it all easier.
I’m that person, the one I promised I wasn’t going to be. I’ve been feeling sorry for myself and have been giving myself permission to retreat into my bubble at pretty much every little bump in the road. A friend asked me if I’ve been writing and I hated my answer enough to get up and brush myself off. My last MRI sucked and that is what knocked me down…hard. I can no longer boast in my MS support group about how long it’s been since I’ve had a relapse or change in my MRI. I really liked being that person and felt like it allowed me to help others, especially the newly diagnosed. It made me feel strong and in control over a body that is anything but strong and a disease that gets most of its attention because controlling it is often tricky and at times somewhat mysterious. All of us diagnosed with Multiple Sclerosis know that we can wake up in the morning unable to walk, button our shirt, speak clearly, go to the bathroom unassisted or even see. These are the big broad ones, there are others. If I think about this too long I start to panic so I try hard not to. The part of the MS uncertainty that I didn’t pay any attention to is the part of the disease that doesn’t demand it but is there just the same- changing MRIs. I knew by the questions I was asked after the scan that things weren’t good. I usually come back the next day to get a copy of the radiology report with a CD of all the images. I didn’t do that this time and instead waited for my appointment to get the news. I still haven’t gotten the report/CD because I still don’t want to know everything. I don’t want to know the new lesion count. My disease is progressing and does it really matter how many new lesions I have? I could wake up tomorrow and have five new ones. So, now I’m trying to decide how to proceed therapeutically. Is Copaxone still working or working enough? Will any of the others work better? No one knows. I see my doctor again next week and will have my answer. I need to move on from this and I will. Oh, I also got denied insurance for the second time because I have a preexisting condition but that is for another post….